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Monday, September 23, 2013

This past week we had an other assesment about our children who have disabilities. This time it was with a state affiliated office. Let me tell you, those tests are grueling because for each question there are three parts to each answer. Each child's assesment takes about two hours.

The guy interviewing us about the assesment was kind and helpful so that did help. His office accommodating to each of the children's needs. He was understanding when Paisley got overwhelmed by something and had to dust his office with his tissues while we talked. He explained how her OCD affected her and how her having dyslexia as well as FXS and an autism spectrum fight against each other. Yet, he was amazed at how she at only 7 years old has learned to cope and self soothe to the point you can't automatically see she is affected by something.

Then it came time for Seth. We had to go into detail about his issues, especially the behavior. The aggression is our biggest concern right now. During that discussion of the assesment, I had to decide the seriousness of the behavior. The choices to pick ranged from not serious to extremely seriouse, each helping by giving definitions to each answer. The definitions were determand and on how I feel others react or how it affects the public when they see such behavior.

When I answered the first few, the gentalman stopped and looked at the scars on my arms. He then asked me to take him step by step through what typically happens and why I didn't think it was a big deal. I did what he asked and told him I didn't think it was a big deal because I deal with this everyday, some days not as big as others. But it has become normal to me. He asked me to really think about the ansewrs and pointed out the differences between what I thought the situation was and what it really was. I was saying they weren't that seriouse and at most moderately. My reasoning is because of how the public, here in Preston, reacts to Seth's meltdowns and even when he gets "violent". The definitions were, the actions are annoying, cause others to look and wounder what is going on but the disturbance doesn't stop the others from competing tasks, or on the moderate answer that Seth would need to be removed so others can go about without causing a disturbance that is distracting. And we were answering on everything else except for the times when Seth is going to school because those actions are isolated to school.

I had to stop and really think about all of the reactions I get here in Preston, Idaho.

My eyes filled with tears at this point. I explained that there has only been a few times where I felt, by the tests definition, that there was a serious problem with Seth in public. This community doesn't shun, make fun, or be rude to Seth. These people, in Preston, are excepting of him, his issues, and when they see him breakdown, they don't point, whisper, or say mean things. They except him for HIM! They love him. It's when we go out of the area, even as close as Logan or Pocatello, we see the difference in how others see the issues.

Seth walks home from school, by himself. And I know if he ventures off the path of his route I will get a phone call. Our neighborhood knows that Seth's walk home from school his his one thing he does with out a parent by his side. That is his one thing he does indepenantly, as independent for him because pretty much all the houses he walks past watch out for him.

The gentalman was stunned in a way. He couldn't believe how accepting this community is. He asked how the police react to Seth. I told him the same way. They know he isn't a danger to others, unless he is riding his bike down the highway. I didn't add that part, that can be between us. When I told him we lived here, a light went on. He said he had a few others he assessed from here and heard the same thing. He told us that is rare to find a community as a whole that accepting. We finished up the appointment by having us think of reactions in other places and at the end of the test I wanted to get back home.

I hear others say they hate Preston. They may have their reasons and that is fine but I love it here. Yes, it is an out of the way place. I have to travel kind of far to really shop. Everyone does know what I am doing, but I also put it out there. I feel safe here. I can let my disabled children outside to play. And, when Seth does run off, it happends, I don't get judged as being a neglectful parent for letting my kid get out of my sight. I mean, think about it if you just thought, "wait, I haven't lost my child and needed to call the cops before. That is bad parenting."

Do you have to keep a constant eye on your kids? No, not like what I am talking about. You can leave the room and go to the bathroom, throw in a batch of laundry, load the dishwasher, take a shower and not worry your child will walk out of the house and into the road. Your child might know that is dangerouse. Mine doesn't. I have to keep a constant eye and it's not humanly possible. I have to sleep, shower, and take bathroom breaks too. It's during those times they would get out and I wouldn't know. Thankfully, we only had to call the police twice. Everything turned out to be okay, and we were lucky. Lucky, that the police knew us and understand the situation. That is because this is an awesome place to live. I have a little joke I always tell someone that asks how long I've lived here and it is, I was born, raised, and hopefully will die here. I love it here.

Tuesday, September 17, 2013

When people see me in public it is easy to assume that everything is fine. Sometimes it is, other times not so much, but I was raised to be a lady and not get everyone to board my pity train. On those harder days it is hard to keep calm and smile, but it is possible. Today and yesterday were one of those harder days.

I am just going to say it right out, Autism freaking sucks! It is a blessing at the same time though. One of those double edged swords that cut deep either way you slice it. Rewarding at times, helping me grow as a parent and fellow man (or woman to be politically correct). At times it's no big deal to have multiple children with disabilities. It is my norm and to use another cliché, it has gotten to be old hat. Other times, like this week, it is super hard, exhausting, and the emotional toll is indescribable.

I have dealt with this severe autism for 13 years, I am tired. I haven't had more than 4 hours of sleep a night either in that Same amount of time. My youngest child is now 2 and I see the same behaviors in him as my oldest. So, yes, as I get asked all the time, he will be just like Seth. The good and the hard. Don't say to me now, "oh, you poor thing. I am sorry." Because, I am not. In a way, I get a do over. I know what works and what doesn't. I can help the issues in the early stages.

With my oldest, I am still learning. His stages are still new to me. Right now the strict routine we've had in play for the past decade seems to not be working any more. It has been suggested that before school he not be allowed to have anything that isn't school related. No television, iPad, DVDs, computer, so he doesn't feel like we are taking something away and school is the punishment making the transition from home o school easier. Sounds pretty simple right? Yeah, it's not. Maybe I am just lazy. He wakes up at 5am, 6, if I am lucky and has to be to school by 8. That is two hour of fighting him not to play with anything, because really, anything he does will feel like it is being taken away. Plus, I have three other children to get ready for school as well. And remember, two others also have their issues to work with.

My one child that doesn't have a label has grown to be an amazing help. This boy sees something the others need help with and he is on it in the morning. It helps we have a listed schedule so each one can see what is next. We use a toke economy in our house and it is what has worked for the past 10 years. The kids bust their hides to get the list done, almost like a race, and look forward to that reward of down time before school on the iPad or what not. Maybe I should change it to loading them up with sweets and letting them burn it off at school, kidding.

Well, this no fun things during down time is dang near impossible. I am constantly reinforcing and redirecting. I am always doing two things at once. Stearing one kid away from this and helping another one do something else. I'm the only parent at home from 6am to 5pm. (Right now he's helping my son's football team and practice goes until 7:30pm) My husband works extremely hard to provide so I can help our children. He can't just come home to help me carry my teenager into school, and my husband is a type of person that has to do backbreaking type work. He just doesn't feel happy if he isn't getting dirty at work. Maybe his parents shouldn't have let him play in the sandpile when he was a kid. Joking again. But seriously, I am handling this on my own. I'm the one who get the multiple phone calls from my oldest child's teacher everyday, drag him out of the truck, kicking and screaming every morning. I help the kids do their homework, cook dinner, clean house, and set out the clothes for the next day and ready the schedule to start all over again by myself.

So, this one more thing I am being asked to do now and not let my son have anything not school related is hard. Almost the straw to break my back. I don't know how other moms, especially ones with mulitble disabled children, do it. My hat is off to you. You are rock stars!

About Me

I write young adult books, *on the road to publication*. I married my high school sweet heart and have some of the most beautiful children in the world. I'm a happy, positive person, and advocate for Fragile X Syndrome and Autism. Welcome to my chaos I call life.